Hi,
I know that this response does not answer your request, but it still seems relevant. I am geeky – although I also want to ‘know my enemy’. Anyway, the link below compares the effectiveness of KRd compared to DVd (albeit in newly diagnosed cases):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10368661/
In summary, with KRd, the myeloma did not return for a significantly longer time than with DVd (‘significant’ in both the day to day and the statistical meanings).
You may or may not want to mention it to your doctor.
By the way, you phrased your options as DVd or KRd or transplant as though only one of these were possible. Couldn’t you have DVd or KRd as induction therapy before a transplant?
Regards
Rabbit
Hi kmc1,
There are 4 classic symptoms of myeloma.
– hyperCalcaemia, which high levels of calcium in the blood. If you believe that you have myeloma, this would be an obvious bkood test.
– Renal (=kidney) failure. Although constant thirst can be an indicator, your kidneys have been found to be normal, so that seems unlikely.
– Anaemia. Again,if you believe that you have myeloma, this would be an obvious bkood test.
– Bone pain. You have that, but there is an alternative explanation.
I am a layperson (with myeloma), but my best guess as someone with myeloma myself, is that if you don’t have hypercalcaemia nor anaemia, then myeloma seems unlikely.
Regards
Rabbit
PS This is very speculative from me, but you mention that your liver function tests are high. In reading up on constant thirst as a symptom, liver conditions cropped up again as a potential cause (and swollen ankles got mentioned too in that context). Reminder: I am a layperson, so please don’t rely on me!
Hi Annieslp,
So sorry to hear about your dad. I hope that you and he are bearing up well, and that at least he is not in serious pain.
Please bear in mind that most of the people of this forum are myeloma patients and family/friends of those with myeloma. Although we generally have experience of and knowledge about myeloma, we are not (generally) medical professionals. You are asking for a prognosis, which is something that even doctors would hesitate to give.
Having said all that, how is your Dad now? Can you give us info please (so we have something to go on), such as myeloma stage and some blood test results. How is he responding to steroids?
Regards
Rabbit
Hi Ree2112,
Being a myeloma patient is tough, physically and mentally, including during remission.
One of the first things that I asked my doctor when I started treatment was: how many patients work full time? He said that very few do so. Some had already retired, but among those who were working, most go part time or stop working altogether.
I went on sick leave for the first few months, then gradually built up my hours again, but I couldn’t work full days due to fatigue. My employer kept paying me (although the rate reduced for the hours when I couldn’t work).
Although I am in remission, I have had side effects from eye problems (fixed a few months later with cataract surgery) and I sense that my brain fog is slowly increasing. As I need to really be at my mental best to my work, ‘full time’ became more and more difficult, and a misnomer due to the fatigue. I therefore came to a deal with HR to go part time and focus on less mentally demanding areas.
I don’t feel one twinge of guilt – and neither should you. I was open and honest from the start, and followed my employee handbook to the letter.
Do what is right for you, and look after yourself.
Regards
Rabbit
Hi Macklebae,
Thanks for your question.
It would be wonderful if a chemo drug could boost platelets!
No, nothing like that. I have Dara as part of my maintenance to make it more effective. One extra reason for that is that I am a high risk case, due to chromosomal abnormalities.
I like to be well informed on MM and treatments for it, so here is a research paper justifying Dara being part of a maintenance regime (not solely for high risk cases):
https://ashpublications.org/ashclinicalnews/news/7756/Daratumumab-Effective-as-Adjunctive-Maintenance
Regards
Rabbit
Hi Brewy,
I am also in remission and have platelet levels at around 50. I can’t answer your question, but I think that my situation is relevant.
Having gone back through my NHS medical records, my platelets may have always been low (they were below the normal range way back in 2007 at least). When I was going through the first line of treatment (roughly speaking, the first half of 2023), they went down to as low as 23, which did mean that I couldn’t get all the chemo that I would otherwise have had.
However, I have been in remission for a year now, and despite my low platelets that has meant lenalidomide daily for the first 3 weeks of each 4 week cycle, plus an injection Dara at the start of each cycle.
I am aware that consultants can disagree, and that there could be some other factor for all I know, but I am an example that it is possible to have lenalidomide whilst having low platelets. Happy for you to share my story with your consultant, or for me to talk directly with your consultant. Much as I respect them, they are not gods.
By the way, if anyone is wondering why an infusion of blood platelets wouldn’t deal with the issue: it can only work in the very short term (a few hours), before the platelets get broken down again in the body. I have had this done but only as a quick and very temporary fix before a bone biopsy or cataract surgery, not as any kind of solution.
Regards
Rabbit
Hi Anne,
You ask about chemo side effects. These can vary enormously from one person to the next. The single most common side effect is fatigue: don’t be surprised if she sleeps for a while during the day.
The dexamethasone can cause sleeplessness at night. When my kidneys failed, I was going to the toilet every hour or so at night, which further disrupted my sleep.
You mention swollen ankles: i had that too. My feet also swelled to one size bigger than normal (and I happen to have huge feet to start with!). The consultant can prescribe something for water retention.
There can also a bit of mental confusion in the early days: that eased off as my body acclimatised to the chemo.
I would not understate the mental health aspect. A diagnosis like this is so tough to take. Family support (and if applicable, religious support) can help so much.
Regards
Rabbit
Hi Silver,
Welcome to the forum.
To start with a bit of info, the four classic symptoms are:
– hyperCalcaemia (high levels of calcium in the blood).
– Renal failure (kidneys stop working).
– Anaemia
– Bone pain.
They are known as CRAB for short.
In your mum’s case, the cancer cells have taken calcium from the bones, which has leached into the blood (hypercalcaemia), which ovrrloads the kidneys (renal failure).
The chemo that your mum is on (which is more or less standard) should kill off a lot of cancer cells relatively quickly, which would deal with the hypercalcaemia and let her kidneys recover.
Although I am only a layperson, I went through this around the time of diagnosis.
You don’t mention bone issues (pain or fractures) and you say that she was doing regular exercise. In those circumstances, I would suggest encouraging her to exercise as best she can, when she can, rather than conserving her energy. It is really tough doing this, but the rewards in terms of both physical and mental health can be enormous.
She can get through this and so can you.
Having myeloma, and caring for someone with myeloma, can be hellish, but most of us on this forum know what it is like and can give lots of support and advice.
Regards
Rabbit
Hi Keith and welcome to the forum.
Getting the diagnosis of myeloma has been pretty traumatic for many of us (me included). Yet it is possible to develop some kind of new normal.
I am reminded of Churchill’s speech “I have nothing to offer but blood, toil, tears and sweat” (although I don’t think that the ‘toil’ part is applicable and the ‘blood’ part has a completely different meaning in our context).
Chemotherapy is tough, but patients get through it and routinely enjoy long periods of remission (my current status – I am off on holiday in a couple of days).
Sorry about your mum. My parents passed away some years ago, but I still had an instinct to run to them for comfort when I was diagnosed.
If you want to give your email address (warning: this forum attracts spammers), I would be happy to contact you one to one.
Regards
Rabbit
Hi Grandmat,
Thank you for explaining.
Lenalidomide is pretty standard maintenance chemotherapy now, and I think I am right in saying that it is the best in that role currently (or as researchers would put it, it is the ‘standard of care’), unless there is a specific reason otherwise for that patient. I am on it myself.
In terms of the trial, whether or not your husband is getting Ixazomib, my best guess is that he will be kept on the current maintenance until/unless either the side effects get too serious to continue with, or remission ends.
Regards
Rabbit
Hi Grandmat,
I did a bit of reading up on the Fitness trial from here: https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-ixazomib-lenalidomide-and-dexamethasone-for-people-with-myeloma-fitness#undefined
It seems from your message that your husband is on the maintenance phase, but I don’t see anything about a new added tablet (unless the ixazomib that he was lreviously taking is now in a new format in the maintenance. This has left me a bit confused, but I am only an MM layperson.
Regards
James
Hi,
I was on chemotherapy similar to your mum’s. I had daratumumab instead of cyclophosphamide.
I have not had an SCT for many reasons. One of those reasons is simply that chemo has improved so much now that there is little to gain further from having an SCT. This is according to my consultant who is an authority on MM. I have also read research papers (my background is in science – but not medicine) which also indicate this.
I went into remission about a year ago, and am taking maintenance chemo.
Please do not worry about your mum not having an SCT. Whilst I obviously have no idea as to the specific reason, your mum may well have extensive remission without it.
Regards
Rabbit
Hi Grandmat, welcome to this forum.
Could you please more information about the clinical trial that your husband has been on? Many of us are interested in possible future treatments.
A lot of us MM patients, whether or not on a clinical trial, don’t have a break as even if/when in remission, we may be on maintenance chemotherapy. This may mean lower and/or less frequent doses, but it helps to delay the MM from coming back.
Regards
Rabbit
Hi,
I will give the best answer that I can on this, but must emphasise that I am a layman with MM, not a professional.
Although paraproteins are a classic indicator of MM, an unmeasureably low paraprotein level could still be consistent with a level of cancer cells that could be further reduced.
There are different kinds of MM. For example, mine is kappa light chain MM.
During chemo treatment (which started in January 2023), my paraproteins went down to immeasurable levels in early March 2023 but my kappa light chains were still continuing to go down before stabilising in late March 2023 (one cycle of 3 weeks later). Therefore it took that extra cycle for the cancer cells to go down to negligible levels (people are supposed to have kappa light chains so mine have stabilised at 25 to 30 from a level of over 3,000 when I was diagnosed).
Therefore, I suggest getting info on your husband’s MM type (if you don’t know it already), and how the blood test reading for that type compares to a normal level. Paraprotein levels are not that sensitive a test.
Regards
Rabbit
Hi Nick,
I think my experiences come in the ‘bad’ category.
The first time I had Zometa, I was fine for 2 days, then as I parked to go to the gym, I felt all energy drain from my body in an instant. I turned around and went home to bed.
Since then, I either get this loss of energy starting 2 or 3 days after Zometa and going on for around 2 days, or I get the ‘flu-like’ symptoms which my nurse warned me about (but worse than they implied).
Let’s just say that I was originally due to get Zometa every 28 days. After I pushed back on this (because the side effects were distinctly unpleasant), this changed to every 3 months (or to be pedantic, every 3 x 28 = 84 days).
At least I know to anticipate feeling horrible then, so I plan accordingly. My next Zometa is due next week, so I am not planning anything more strenuous than reading and watching TV a couple of days later, as I probably won’t feel able to do much.
